Flying by the Seat of My Pants

Update: IEP tomorrow

I spoke with the case manager on Tuesday afternoon. While she seemed to be sympathetic to our situation, her official stance was “Let’s go through the IEP and see what school comes up with before we look at what’s next.” Toeing the party line, for sure. Needless to say, I got off the phone feeling very frustrated and a bit down-hearted. As I related the story to my husband Tuesday night, he reminded me —being so much more pragmatic and less emotional than I am on any given day —that to the larger entities involved (those being school and Medicaid), this is as much about a business negotiation as it is about the best interests of a small child who needs much in the way of supports and services.

In other words, my son costs money and they want to see who gets stuck with the largest portion of the bill. Ultimately, they will come around to doing something close to the right thing; I have to believe that or else I would give up the fight before I even begin. In the meantime, they will haggle and dicker like two old-world merchants transacting a complex ritual in the marketplace. Sigh…it is so hard not to take it personally and even harder still to wait it out.

The good news, though, is that our advocate is worth a gazillion times her weight in gold. Seriously, I cannot say enough about the way she is helping us —and it’s not just in terms of the specifics of this IEP. She is a very passionate advocate for children; having spent the past 18 years doing the same for her child with disabilities, she has been tested in the fiercest battles and has emerged with an iron will which doesn’t take “no” for an answer without first trying every avenue to “yes.”

It was at her urging that I delved into the murky depths of Nik’s past. It has also been with her assistance that I made a significant connection today with someone who has the ear of one of the top people with Medicaid’s Managed Care programs for our state. If someone can help push our case through, she may just be the one to do it. Of course, she warned me that she must first talk with our case manager and see where they stand on things so she doesn’t step on too many toes indiscriminately. Ah, yes, the wondrous joys of state bureaucracy; no agency is immune to the politics and the red tape. Ugh.

The other gift our advocate has given me is the constant reminder that, since we currently do have outside services for Nik —already authorized by Medicaid —we actually do have the power. I am not 100% convinced yet, but she keeps insisting that we will see in the end. I hope she’s truly right; I am anxious about getting my hopes up but they are definitely a bit higher than they were a few days ago!

Meanwhile, there is still no SLP at school to replace the one that left. When I spoke with the principal this morning, he told me that he’d made an offer to someone but she took another offer; I’m guessing it was in private practice or a non-school setting and infinitely more lucrative from both a financial and professional perspective. I feel terrible for the speech therapists at school; right now there are only two to handle 96 kids spread out over four locations and one of them is, I believe, only part-time. I can’t fault the previous therapist for leaving; she felt like she couldn’t make a difference for a single child given what she had to work with in terms of time constraints, limited resources, uninvolved families and administration…it’s a sad commentary.

What makes it even more frustrating is the fact that many of the new therapists at school are just that —new therapists. They don’t have the background and the experience to draw upon to handle many of the more complex needs of some of the children like Nik. So those kids are left with nothing substantial in the way of help. I haven’t seen or heard from too many other parents at school who either know that they can fight for more/better for their child or who have shown an interest in fighting for it. Sadly, many just accept whatever their child gets and figures “It’s better than nothing.” Obviously, I disagree. I almost think the little bit they get can be worse because parents make some assumptions about the consistency of what gets carried out in the classroom and don’t follow it up with effort at home.

I don’t mean to imply that I think every child’s parents thinks, feels, or acts this cavalierly; but they do at my son’s school. The demographics are such that many of the children come from single-parent homes, are being raised by grandparents, live in foster care or— worse —are homeless. There are some middle class families at school but they aren’t highly visible in their involvement. I’d like to try to change that; not only would I like to see those families get more involved, but I’d like to see the district provide training to all families about advocacy, IEP’s, planning for our children’s financial futures, etc.

I can see myself as an active, more deeply involved parent at some point. But that time is not now. Now, I want to focus on Nik and getting him the right supports to continue to flourish as he has begun to do…at home.

Tonight, though, I am a quivering mass of nerves and anxiousness. We have decided that the line we are going to take is simple — no school for Nik until he is 5. Sounds so simple, right? I know with every fiber of my being that this is the right decision. Yet, I am terrified of “them” taking away his services and leaving him, us, with nothing.

If you believe in the power of collective prayer or visions, please say one for us tonight and tomorrow? Pray, wish, envision, that Nik gets to spend the next year happily learning the things that most toddlers learn at home with their families. Envision that Nik stays healthy and grows stronger with each day. Envision that he continues to learn the fundamental life skills he will need when the day comes that we must send him out into the world. Envision that we can put that particular day off at least for another year.

In the midst of all the bleak feelings of frustration and near-despair, there have been some really sweet moments with Nik lately which have made me smile. Some of them have been visuals.

Others have been complete sensory experiences—like this morning. Nik awoke at 4:30 am — all sing-songy and chirpy. I lay in bed listening for a bit and smiled. Dragging myself out of bed, I went to scoop him up to go downstairs. When I picked him up, Nik wrapped his arms around my neck, looked me in the eye and then tossed his head back and laughed as if we had just shared the greatest joke. This was followed by a light touch of his forehead to my lips —our customary good morning kiss.

The merriment continued as he played in the family room while I made coffee and got the pump ready for his breakfast. I stood for a moment and watched him play. He was the embodiment of the most exuberant, unbridled joy. There was no one thing I could see that was making him happy —he just was. At one point, he was laughing so hard, he leaned against the TV, panting like a winded long-distance runner, then he doubled over and just crumbled to the floor in a heap of giggles. My face hurt from smiling so broadly.

If only we adults could start each day that way; wouldn’t the world be so much brighter?

Just reading this tonight, after the IEP has already happened. I do pray that it went well. And if it did not? I will pray that God opens an amazing window as He has done for us. You’re all in my thoughts tonight.